I wanted to wait and have Madison's Prograf levels checked a couple times before updating her blog. With that in mind... her levels look good so far. We are all relieved. We have sent letters to our insurance company, updated the pharmacy, and officially changed to Prograf. After all of this effort and the price of Prograf, one would think the bottle would be gold, OR at least have a big, gold bow on top. But it doesn't.

Good news: (so much good news...)1. Because Madison's Prograf level is stable, we are now at once a week appointments. 2. Last week was the first week, since November 30 that Madison only had one blood draw. My poor little girl has been poked at least twice a week since November 30. AND she still never cries during a poke! She watches intently and just as she's about to get poked, we simply say, "owie" together and then she is fine. 3. Madison's medications are slowly decreasing (this is so exciting to watch..) She now takes only 10 medications throughout the day.

We are so proud of our little girl. I can't believe what she's been through and she's just fine. It's a miracle and gives me goose bumps every time I look at her. She is doing so well. She's beautiful and absolutely perfect with an absolutely perfect heart.

Dates to Remember:

Madison

Miss Madison and her twin brother, Cooper were born June 10, 2008 at the University of Utah Hospital.Madison is diagnosed with Wolfe-Parkinson White Syndrome (abnormal heart arrhythmias) and Hypertrophic Cardiomypathy (heart muscle is too thick). Due to the Hypertophic Cardiomypathy, Madison's heart is unable to function properly. Currently, her little heart is working too hard resulting in the valves leaking and a few other symptoms.On October 15, 2009 Madison was listed for a Heart Transplant. She is listed as a 1B status.

UPDATE: On November 30, 2009, Madison was admitted to the ICU at Primary Children's Hospital for severe heart failure. We had hit our brick wall that Dr. Everitt explained might happen. Madison was pale, lethargic, and throwing up. Her liver was enlarged. It was obvious that we were heading in the wrong direction.Immediately upon being admitted, Milrinone (heart medication administered only through IV) was started. Madison also had to have a J-Tube placed (kind of like a G-Tube, but goes to the intestines rather than her stomach).At this time, Madison's status was changed to a 1A on the Heart Transplant List.On day 4 of being in the ICU, Mark and I were notified that a heart had become available for Madison. Our medical team believed this would be the perfect heart for our little girl.On December 4, 2009, Madison received the most sacred gift; she received her new heart. Thank you to our donor family. We love you.

The Day I Became a Heart Mom

One day my world came crashing down, I'll never be the same. They told me that my child was sick. I thought, "am I to blame"? I don't think I can handle this. I am really not that strong. It seemed my heart was breaking. I have loved her for so long. I will not give up on this child. I will listen to your advice. I will give my child any chance. No matter what the price. I will learn all that I need to help my child thrive. I'll even use that feeding tube. My child must survive!

Will she need a lot of therapy? Will she gain the needed weight? Please God, help me do this. I will accept our fate.

When the monitors beep at night, it serves as my reminder. How many parents would love that sound. Tomorrow I will be kinder. As another Angel earns his wings, I run to my child's bed. I watch her sleep for quite a while. I bend down and kiss her head. I cry for the parents whose hearts have been broken. I look to You wondering why? Oh Lord, I just can't know your ways....no matter how I try.

And yet, I trust you hold her life, and guide us through each day. My mind says savor each moment she's here, but my heart begs, "PLEASE let her stay"!

From pacing the surgical waiting room, to sitting by her bed. From wishing for a good nights sleep, to learning every med. From wondering, "will she be alright?", to watching her reach out her hands. With every smile my heart just melts, despite life's harsh demands.

For all who see that faded line. I look to them and smile. You see MY child is loved so much. I would face ANY trial. That scar I trace with my finger (It's the door to her beautiful NEW heart). God must have known how much I'd love her (Just as He loved her from the start).

A heart mom is always a heart mom. Now wise beyond her years. For those who have angels in heaven, our hearts share in all of your tears.

Every day I will try and remember, I was chosen for her (and no other). I will always embrace that beautiful day.......When I became a "Heart Mom".